Aldosterone and BP

I would like to be tested for this but my gp just says keep taking bp medication and you do not require this test - I would be willing to have it done privately if I could do so without being referred by my gp - I don't know if you can do this or not. This year on holiday my legs and ankles were so swollen the only way I could travel home was by wearing my husband's size 11 flip flops. My medication causes such awful pain in my joints I am at my wits end. How did you get your test done and how was it discovered you had high aldosterone?

Hi Molly,

I seemed to suddenly develop very high blood pressure (220/110) last October when in showed up just by chance after I went to GP to sort Migraines out. They then monitored my BP and realised it really was that high all the time and not white coat. My GP did 24hr urine test, ECG and I was put on a calcium channel blocker and refered to cardiologist. After been put on two further tablets by cardiologist and given scans and chest x ray of heart and kidneys I was referred on by the cardiologist to the endocronoligist. They then did another 24hr urine test and various blood tests before taking me off all medication and doing a specialist blood test (had to be sent to London) for 'conns syndrome' It was this test that showed excess aldostorone, and after a ct scan of the adrenal glands to see if it was caused by a tumour, it was shown that I just produce too much aldostorone.

Sorry if that seems long and rambling but has taken a year to get to this point. I think they only check if your BP is extremely high and is not controlled by 3 or more tablets. Mine never really got below 145/100 before it was discovered why. I didn't really have any swelling.

The only thing they do for it is put you on Spirolactone but this has reduced my BP to below 140 and means have started to cut out my other tablets (able to drop my 10mg ramipril!)

Mollymac is your BP hard to reduce? I think the test is a last resort as only certain hospitals can do it .. mine was done at St Marys in London. (bloods taken at local hospital and then taken there) Have you had a 24hr urine test?

Let me know how it goes and good luck.

I'm 30 and for last 3 years have had uncontrolled extremely high bp. Drugs were ineffective. GPs repeatedly told me I had white coat syndrome or just had high bp. Was 120/80 at 26 years old and literally jumped to 150/110 overnight and kept rising until was normal to read 200/130!!

I wanted to share my story in case others recognise. My symptoms were severe and regular headaches, v high bp, intolerant to alcohol suddenly.

I was finally under care of a nephrologist who tested my adrenal glands through CT scan and special blood tests and was diagnosed with Conns syndrome. An aldosterone producing nodule on one adrenal. I had the adrenal gland removed by laproscopic last week and my bp is now 120/80!

If you are young especially and resistant to hypertensive meds you should insist on adrenal glands being tested for Conns. It's more common than most GPs think.

Hi Lyn,

It is so good to hear your story and sounds very familiar. My BP was fine for years and then within a year had risen to 220/110. My GP sent me off to test at home and 3 weeks later something was done about it when thye realised it was not white coat syndrome but was constantly over 220/110.

4 different tablets and several scans later I was diagnosed with hyperaldosterism ... mine is not official Conn's as I do not have any growths on my adrenal gland so they cannot remove then, but I am on spirolactone and that dropped my BP within a couple of weeks to 130/80 ish.

Like you I too had been having really bad headaches and vomiting so thought they were migraines. Can you tell me what you mean by intolerant to alcohol as I no longer drink wine as got bad headaches from a small amount.

My optician at an eyecheck was the one who also told me to get my BP checked as it showed up on the opti map scan.

Really good to hear yours is going so well Lyn

Ann-Marie

Hi Ann Marie

I used to be able to drink cocktails, vodka, gin and tonic etc but at the same time as the onset of high bp and severe migraine I also starting to get the most horrendous hangovers. I wouldn't be able to lift my head off the pillow for 36 hours due to worst headache and would vomit regularly during this time. Once I had one gin and tonic and got sent home from work the next day due to feeling so dreadful. I wouldn't have to drink very much at all for this to happen to me so I pretty much stopped drinking.

I haven't tried it out since my adrenolectomy but I am hoping that will go away now.

Just a note to say my adenoma was 1.5cm but my consultant still cannot see this on my CT scan, only the consultant radiologist can see it and it was clearly visible when they removed the adrenal. If I were you I would try go for another ct scan to make sure you weren't just at the early stages and an adenoma not visible yet.

I also had Adrenal Vein Sampling test done where they go into the adrenal vein on each side and take blood sample. That way they could be certain which gland was overproducing the aldosterone and be sure the adenoma was functioning.

Thanks for the advice Lyn,

I did discuss AVS with my endocrinologist but she felt it was unnecessary and did ask about a Pet CT scan as that apparently shows it up better but she assured me the radiologist had not seen anything and therefore not necessary. .. but i do wonder!

Are you based in the Uk and near a big hospital? I would have had to go to Bristol for AVS so maybe that was another factor?

Hope you get back to cocktails soon